100 Chapter 6 summaries and interpretations of the key themes identified, supported and illustrated by quotes from the raw data. Findings The participants’ ages ranged from 41 to 68 years (median age 58 years). Three had a lower/ intermediate educational level and 8 a high level (bachelor’s or master’s degrees). Nine had VWD type 1 (82%) and 2 VWD type 2A. Medical treatment including oral contraceptive, intranasal desmopressin (DDAVP) and levonorgestrel intrauterine device (Ln-IUD) had failed in controlling HMB. Most women (n = 10) underwent hysterectomy, whereas one woman underwent EA. One critically important fact first appeared during this study: a bleeding disorder was mostly not considered as an underlying disease for HMB before surgery. VWD was diagnosed in 8 of 11 women after they had surgery for HMB. All these 8 women had undergone a hysterectomy. At the start of each focus group, the participants shared their experiences dealing with VWD, and how this influenced their well- being. Next, they talked about HMB and how this had influenced their life. They discussed what kind of decisions was made related to surgery, whether complications occurred, and what support they received from providers. They discussed how professionals could support them best, what is needed for accessibility and continuity of care for VWD women. The key themes are presented in the following sections. Received and needed support from professionals All women agreed that their well-being, during school or work, was negatively influenced by HMB. These feelings of stress were caused by the emotional, social and physical impact during the menstrual bleedings. The women emphasized that receiving mindful and informational support during times of stress was important. They recommended that information (on topics such as HMB, blood loss during coitus, pregnancy, post- partum hemorrhage, surgery, type of medication and surgery) be available for adolescents with VWD so they could be prepared for all that can happen. For their daughters and other young women, they would want professionals to proactively ask for their wants and needs in case of heavy menstrual bleeding. Most of the participating women felt that they had not had that kind of support when they were in their teens or 20s. Preferences for the scope and intensity of support varied. Suggestions for support were approachable providers, sharing information from the VWD association, using the leaflet about VWD as a checklist before surgery. However, if providers would have much more knowledge about bleeding disorders like VWD, asked in- depth questions when faced with HMB or took rapid actions like expert consultation, this would support tailored care for women with VWD. Support for the diagnosis of a bleeding disorder. The participants strongly felt that when women experienced HMB from menarche, the possibility of a bleeding disorder should be considered by GP or gynaecologist. They often felt that diagnosis was delayed until a further bleeding complication occurred, for instance after surgery. In our focus groups, only 3 of 11 women had VWD diagnosed before surgery. The participants suggested that professionals could use a checklist with possible topics to consider the possibility of a bleeding disorder:
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